Hemoglobin Variants: Are You Really A Minor?

Oh dear, I don't really know where to start or if I am even on the right thread.
I have beta thal minor and was always told it was of no consequence until I wanted to have children. (My husband was tested and there was no risk )
I have what I would call 'spikes' in my symptoms....extreme tiredness (common in all 3 hormonal states), during pregnancy and now, breathlessness and poor concentration. Dizziness to the point of not driving until it passes.
 During puberty (when I was diagnosed, my father had the trait)
During pregnancy
And now, I went to my gp with what I thought were premenopausal symptoms however they seem to think it is the beta thal that is to blame. (There were no abnormal hormonal rates in my tests, although I was told they were not definitive)
Has any other minor had similar spikes related to hormonal changes, it's the only thing that links my symptoms.
I have a second lot of blood tests on Tuesday and having looked at other posts I now have a better idea of what to look for in the results.
Thanks all for your help and support, for the first time I have the missing piece of the puzzle!

rtherbert,

you are lucky you got a GP who seem to think it is the thal to blame. Yes I am a minor and you will find many many similar complaints on this forum. please help yourself unfold the puzzle!

jay

Hi rtherbert,

I was wondering if you have had any resolutions to your "premenopausal symptoms".  I am a 43 year old female with beta thal minor, and I too have been having some health issues which I thought resembled hormonal changes.  However, lab results indicate that  this is not the issue.  The only abnormal results were related to the thal minor.  I have been not well for the past three months.  Started out with severe fatigue, dizziness to the point of almost passing out, headaches, hair loss, vasoconstriction in my feet (they turn white, purple, black, and red, they're also very cold, numb, etc.). Two doctors said it was raynauds.  In addition, I developed blisters on toes, my joints burn like crazy, and have numbness/tingling in my feet, lower legs and hands.  I've seen a hematologist and a rheumatologist and after numerous tests, nobody has any answers.  My hemoglobin runs around 9.0, and I'm not wondering if all these symptoms are due to getting older and my body isn't as capable as it once was in adjusting to the lower hemaglobin levels. 
Thoughts anyone......

Tell me about it! i am 30 and feel tired all the time and have joint pain as well. my hb runs around 9 . no amount of rest helps. there are times when i feel very energetic and i take advantage of those times. i had no symptoms until 25 and then one morning i woke up feeling tired and haven't felt any other way since. i somehow managed to get thru pregnancy with hemoglobin of 8. after delivery everything has been going down hill. toughest part is not being able to keep up with my child, or not being able to do all the activities i want to do with my child. due to my child's unique thalassemia combination (HPFH3 + Beta thal) , having to juggle work, baby, home, his family (doesn't understand my condition) is becoming very challenging. not to mention a back injury that has many set backs.

my husband is a carrier of a different type of Thal trait so his hemoglobin isn't affected. no one in the family understands what its like to feel tired all the time and have aching joints 24/7. it gets very frustrating at times. 

 

PKP1713, have you had your vitamin D level checked? Low D is quite common and exacerbates the problems of thal minor.

Am coming down off the best year of my life following a blood transfusion when I was hospitalized with acute idiopathic pancreatitis. 16 days in the hospital, no food for almost two weeks, morphine pump--I was really ill, but even before I was released, when I still had pain and couldn't eat--I was feeling "something." Effects started fading at 6 months. Wow, if that's what normal people feel like...

Andy

i plan to get my vitamin D levels checked when i go for my yearly check up soon. i have had low vitamin D levels in the past... i have been wondering if that is adding to my exhaustion on daily basis.

Am coming down off the best year of my life following a blood transfusion when I was hospitalized with acute idiopathic pancreatitis. 16 days in the hospital, no food for almost two weeks, morphine pump--I was really ill, but even before I was released, when I still had pain and couldn't eat--I was feeling "something." Effects started fading at 6 months. Wow, if that's what normal people feel like...

Do you think it is possible for you to describe your story and especially what you felt in detail? I'd love to read that! 

Sure. I'm 64, diagnosed early 40's after being told I wasn't. Sister & Nephew both diagnosed earlier. Youngestdaughter also minor.  Took a lot of iron over the years! Had started having a steady stream of infections, mostly sinus and lucked into an Indian Dr who recognized my symptoms but got the usual response "trait' is symptomless. Got one transfusion during breast surgery (cancer) but I think there was no benefit since I was bleeding out at the time. Continued getting infections-- every couple of months on antibiotics. Infections moved to lungs then pneumonia. Hospitalized a couple of times before the pancreatitis.

Then the second transfusion. My HB was 7 (usually 9) and the drs just did it. I was pretty out of it so couldn't tell about the thal.

In the next few months I lost 40 pounds, discovered what people meant when they said "energy", regained focus (and my long lost libido), and miraculous lymph age not had a single infection--not even a cold.

I stopped losing weight after six months, but I had

(I think something of your story was cut off in your post.)

I guess a weight loss often makes us feel better. I have been anywhere between 165 and 250lb in the past and I felt pretty 'light' when I was at 165lb. A great feeling overall. Would you say that the weight loss occured due to the additional energy you gained? Did it lead to increased activity during the day?

I'm in my 20s and I haven't lost my libido, but I'd say that I also have been experiencing problems in that area. I'm in something like a 'standby mode' where my body tries to conserve as much energy as possible to simply get through the day and that means that I feel like I don't have any 'additional resources' to search for a partner. People also interpret the fatigue as disinterest and so I'm seemingly conveying feelings that I don't really intend to. It has made me a bitter person somehow, because I'm scratching on something, but I can't reach it. There are days where my energy level is high enough to give me a 'sneak peak' of how life and especially life with other people could be if I just had a bit more energy. It's frustrating...